Weekly Update #85

Things have not been great since I posted last week.

On Monday I emailed my doctors a few questions to get a better idea of what might come along with my different options. One of the questions I asked was, what if we do nothing, how long until my disease becomes life-threatening? And the answer is months. It’s a range, so they don’t necessarily mean the 2-3 your brain may jump to, just that it won’t be years. I was shocked by the reply. My body feels fine, how can my tiny cancer grow and ruin it so fast? I don’t know and don’t want to, I just hate it. Anytime I try to process it I think of EOL, so I will be working on all that paperwork soon.

Since I do not feel done yet, my only option is a clinical trial. I have already been contacted by the team in San Antonio and will go visit them next week. I am still waiting to be contacted by MD Anderson, where I have to have an initial visit with my “current” oncologist and then I’ll go home and he will refer me to the phase 1 team. Bureaucracy will bureaucrat and then I go back for an appointment with the clinical trial team. This all means that there are multiple options available to me. I will be in a clinical trial. We just don’t know which one yet.

One bummer thing I have had to talk with some members of my team about is false optimism. There’s research showing that as you near EOL, doctors you have a close relationship with may be more optimistic than called for, because they personally don’t want anything bad to happen to you. And since my doctor ended a phone call with me this week by saying, “I love you” I think I have a reason to be concerned. I had team members reassure me that they are aware and worried, too, about whether I’ll get accurate info. We have a few doctors at the clinic that we are maintaining a distance from so they can be there later to give unbiased opinions on my case. It’s a relief to know my clinic was already ahead of me on this.

Now is when I usually post a moment of joy from the week. It was a nice weekend with my family. We watch a midday movie on Sundays that one of the grown-ups picks, generally rewatches of things from our youths. This week my husband picked the little known move Brain Donors and it made my daughter laugh so hard. I love when she just giggles and giggles.

4 thoughts on “Weekly Update #85

  1. Dear Christina,
    You have had a difficult week for sure. It’s interesting how incredibly educated one has to be to navigate this disease and also the system. It’s actually a full time job. I am a nurse and a mental health therapist and I well know how
    clients/patients can become
    special and there can be blurred
    boundaries which then makes the
    objectivity difficult albeit so
    important….even just to get an real
    view of how things are going.
    I loved reading about your daughter giggling and how you are able to enjoy her.
    Thank you for your writing and willingness to share this experience.

    Like

    • Janny, you are so right that it is a full-time job. It was maybe part-time when I was first diagnosed but as time goes on and I have more side effects to deal with via other specialists, and the time spent educating myself, it is a full-time job. It feels like I should have so much free time but I definitely don’t.

      I do love my oncologist, too, and am glad to have a team that cares about me. But yes, I need some objectivity.

      Thank you for reading along. I know that there’s not much insight into this experience out there in the world and I want people to be able to know about it if they want to.

      Like

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